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"A Lack of Expert Knowledge Prevents Right Treatment“

"A Lack of Expert Knowledge Prevents Right Treatment“

Man with grey hair and glasses met the chief physician in care for disabled persons at v. Bodelschwinghsche Anstalten Bethel, a charitable religious foundation concerned with people in need. Michael Seidel talked about deficits in the care of people with a learning disability and how to improve the situation. Mr. Seidel, are people with a learning disability subject to worse medical care than people without a learning disability?

Michael Seidel: Yes, this unfortunately is clearly true. It does not apply to every single case but considering the whole group of people with such a disability it is true. Since 1994, which now is 15 years ago, the German Constitution was supplemented by an annex stating that nobody is allowed to be discriminated due to a disability. How is it possible that the German health care system keeps ignoring this demand against discrimination?

Seidel: There are a number of reasons. On one hand, the German society has a long tradition of denying disabled life to be of equal value which is mirrored in the reality of our care system today. On the other hand, people with a learning disability were formerly put into special institutions where they were looked after – also from a medical point of view. The consequence was – provocatively speaking – that the general health care system was excluded from their special care. In the meantime, segregating institutions have been and will step by step be abolished because the idea of inclusion gains more and more weight. The drawback: The general health care system that now has to provide for these people does not have the special knowledge and practical competence needed. Considering the fact that people with a handicap generally need to consult the doctor more often than people without a disability, one thinks that especially medicine should be accessible for everyone.

Seidel: That is true. People with a learning disability need health care services far more often than the average population. It is a basic principle that the health care system’s problems with handicapped people increase concomitantly with the complexity of a disability – the institutions are not prepared, neither professionally speaking nor organizationally. This basically means that medicine is not freely accessible for everyone. What are the problems people with a disability face when they consult a doctor?

Seidel: Most people have reservations when being faced with disabled people. Often their right of respect and self-determination is not being respected by others. This attitude leads to behaviors like ignoring the disabled person. The doctor, for example, tends to speak to someone accompanying the disabled person rather to the disabled. The greater the intellectual or mental disability the greater is the danger to be marginalized. Certainly, it is more difficult to communicate with people that speak very slow, are hard to understand or hardly understand complex facts. Doctors try to avoid these situations that require a lot of effort since they do not get paid more for the special treatment. Medics receive the same amount of money as for treating non disabled people even though the examination takes longer. What makes the medical treatment of people with a learning disability so different?

Seidel: This is predominantly due to the special knowledge needed for this group of people. Not every doctor, for example, is aware of the fact that people with Down’s syndrome often suffer from early Alzheimer’s. Signs start to appear during their fourth or fifth lifetime decade and not in the seventh or eighth as in normal people. It is necessary to know this in order to make the right diagnosis when observing first behavioral changes. Another important point is that people with a mental disability often suffer from weakened senses which is often being overlooked. Generally, sight and hearing are not being tested on a frequent basis. The consequence is that doctors think that strange behavior may result from within the person itself even though the surroundings are to blame because those responsible did not provide the right aids: Glasses are not adjusted properly, eye cataract or presbycusia are not recognized. Therefore, many disabled people become isolated and the surroundings do not react even though it would be so easy to counteract. Some behavior may even be interpreted as problematic. Do you have an example?

Seidel: I remember a young man with a learning disability being treated in hospital was spending its entire time in front of the nurses’ room. When a nurse came by the man held onto the sleeve and followed her everywhere disturbing everyday business. At some point doctors realized that the patient suffered from profound deafness and therefore was not able to follow what was going on in his surroundings. He held on to the nurse in order to get lunch, in order to keep track on what was going on around him. The patient was actually not in some kind disturbed - on the contrary, he acted very intelligent because he had found a way to help himself to get through the day without missing out. What needs to be done to end the discrimination of people with a learning disability in medicine?

Seidel: One thing is for sure: There is no point in moralizing. It is important to develop awareness towards these problems as well as to propagate knowledge and competence in this special field. The topic needs to become part of advanced training for physicians. Additionally, it has to become reality that people with a disability find the special treatment they need anywhere in the country. Every city, every county must provide doctors that are specialized on the treatment of people with a learning disability who in turn need to be adequately paid related to the more intense treatment this group of people needs.

The interview was conducted by Anke Barth


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